Partnering With Your Medical Team

Partnering with Your Neuro-Oncology Team: You are the Driver of Your Care

The management of ependymoma requires a comprehensive, multidisciplinary approach to care. Brain and spine cancer patients need access to a network of doctors and other members of a well-coordinated medical team such as neuro-oncology nurses, neuro-oncology social workers, psychologists, nutritionists, rehabilitation specialists and clergy.

Your health care team may change as your medical and emotional needs change, and will include professionals with the combined expertise and experience to give you the brain cancer treatment you want and deserve.

Taking an active role in your health care requires constant communication in order to get the best possible care. You should know what you want from your brain or spinal cord cancer treatment, and what options are best for you. You are the most knowledgeable member of your neuro-oncology team when it comes to your body, and you can avoid potentially serious complications by keeping your team informed of harmful side effects and neurological symptoms after brain or spinal cord cancer treatment. You can provide critically important information needed to make a diagnosis by sharing all symptoms, and you can take the lead in prevention by sharing all aspects of your family’s medical history. Every encounter you have with your health providers has an impact on your care – for better or worse.

Tips for Successful Communication

Be vocal about your goals for each visit and problems, concerns or neurological symptoms you wish to discuss. Do not wait until the end of the visit to address the most important issues, and write down questions before your office visit.

Your doctor needs complete and accurate information to diagnose, treat and manage your brain cancer. Keep your neuro-oncology team informed of any changes in health, including neurological symptoms or side effects.

Tell your doctor about every medication you are taking including prescriptions, over-the-counter medicines and dietary supplements such as vitamins and herbs.

Tell your doctor about any allergies or reactions you have had to any medications.

Inform your doctor of any other treatments you are receiving.

Tell your doctor about recent trips you have taken. This information may be relevant to symptoms you are having.

Discuss your brain tumor treatment goals with your team. Do you want to take a “leave no stone unturned” approach or do you want to avoid rigorous brain cancer treatment to preserve quality of life? Do not assume your doctors know your goals and preferences.

If you have concerns, speak up. Do you agree with your diagnosis or brain cancer treatment recommendations? Ask your doctor to clarify these concerns. You want a doctor who is receptive to the information you bring and who is willing to engage in open dialogue about your issues and concerns.

Ask questions. Let your doctor or nurse know if you need any clarification on information, and ask to receive it free of medical jargon if needed. Some more considerations when thinking of questions to ask:

Do you understand your condition?

Do you need more information about possible risks and benefits of proposed brain cancer treatments?

Do you understand your full range of brain cancer treatment options?

What exactly are your doctors planning to do and how?

How will you feel during your brain cancer treatment?

What side effects or neurological symptoms, if any, are you likely to have?

Assert yourself. It is normal to feel intimidated when dealing with doctors, but never be afraid to speak up because nothing is unimportant when it comes to your health. Follow your instincts and intuition, and have confidence in your ability to guide your care. You can never be too diligent when battling a serious illness like brain cancer.

If your doctor writes you a prescription, make sure you can read it. If you can’t read the handwriting, the pharmacist might not be able to either.

If you are unable to get answers to all your questions or resolve all your concerns, ask your doctor or nurse the best way to follow-up. Whether they prefer you schedule another appointment, email or call them, make sure you have their most current contact information.

Always get copies of your medical records to keep yourself and your team of doctors fully informed about your condition. By maintaining a centralized file of your records, you will have copies available for the multiple doctors and neuro-oncology teams involved in your care.

If you have questions about how to partner with your medical team, or what questions you should ask contact us. You can also follow us on Facebook and Twitter and connect with other patients and medical providers who can help answer your questions and provide guidance.